If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

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Social Media/ Message board : Rules of operation

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Lisa Salberg Find out more about Lisa Salberg
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  • Social Media/ Message board : Rules of operation

    Social Media Disclaimer
    Open discussion through HCMA's social media sites is always encouraged. We look forward to hearing your stories and experiences at HCMA through any of our online outlets. However, to make sure posts stay on topic, and are considerate of others, HCMA will practice a prudent amount of monitoring. Information regarding medical issues or advice posted on our pages should not replace a consultation with a health care professional.
    Please be aware that HCMA's social sites are completely public. We strongly warn against disclosing any personal information and we suggest you exercise complete caution when posting. Please be advised that posting information regarding your personal information, location, medical record or financial information is strongly discouraged.
    That's the plain English version. Here it is in legal language:
    By posting any comments, posts or other material on HCMA-sponsored social media networks, you give HCMA the irrevocable right to reproduce, distribute, publish, display, edit, modify, create derivative works from, and otherwise use your submission for any purpose in any form and on any media.

    You also agree that you will not:
    • Post material that infringes on the rights of any third party, including intellectual property, privacy or publicity rights.
    • Post material that is unlawful, obscene, defamatory, threatening, harassing, abusive, slanderous, hateful, or embarrassing to any other person or entity as determined by HCMA in its sole discretion.
    • Post advertisements or solicitations of business.
    • Post chain letters or pyramid schemes.
    • Impersonate another person.
    • Allow any other person or entity to use your identification for posting or viewing comments.
    • Post the same note more than once or "spam."
    HCMA reserves the right (but is not obligated) to do any or all of the following:
    • Remove communications that are abusive, illegal or disruptive, or that otherwise fail to conform with these Terms and Conditions.
    • Terminate a user's access to the social network upon any breach of these Terms and Conditions.
    • Edit or delete any communications posted on the social network, regardless of whether such communications violate these standards.
    • Remove and delete any communications posted that may be deemed as advice from non-qualified medical personnel (doctors, nurses, physician assistants) and warn the poster. After three (3) warnings the poster will be banned from posting to HCMA websites.
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

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